Since this is pretty personal & I'm sharing a few of her tweets here, I made sure that @harriet75 was ok with me putting them in this thread. I don't know how her story will turn out, but it makes me feel sad to read what she is going through & how she is feeling.

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Tweeted by @harriet75

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@AllergyKidsDoc puzzle for you have you ever seen a child who had passed baked egg 5 years ago. Then pass whole egg challenge. To only

She has only had OVERT egg on two other occasions, and in both instances, she didn't feel at all well-- not well enough to finish the portion she had, in fact, and then she developed asthma that lasted for days. I have no idea what it means, and I know that our allergist won't either-- because-- as those tweets show-- not supposed to happen.

We've kept her on baked egg in prepared foods that are otherwise safe, but we're also not going to push our luck. Annual flu shots and being able to tolerate cross-contamination in restaurant settings is too important.

I'm so sorry to hear about another child and parent having to go through this. I agree that there needs to much stricter protocols regarding the amount of passed allergen a patient may eat afterward. And doctors truly have to listen to their patients and their parents. It is supposed to be a team approach to health, but often times the doctor is really the only one on the 'team'.

So once you pass a food challenge, it's what we call the Gold Standard. It's as definitive as anything we've got that you are no longer allergic to that food. The only food that has been proven, that has been shown, in the medical literature, in the research to where someone passes a food challenge and can develop the allergy in the future is actually peanut.

He talks about the importance of keeping peanut in the diet following a pass, which is something we know is currently recommended to maintain tolerance ... I'm fine with that part, but then ...

50:15

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to my knowledge, there's no other reports in the literature of people passing food challenges and then experiencing a recurrence of those allergies in the future.

50:29

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so I would reassure you with food challenges, if you pass, if you're allergic to food, you pass a food challenge, your likelihood of recurrence in future is, never say never, but exceedingly exceedingly low with the exception of peanut, and with peanut if you keep it in your diet, you can make that risk of recurrence much lower

For the most part, I liked this webinar, but wanted to post this b/c the focus is keeping the food in the diet after pass/outgrowing ...

46:26

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having regular exposure does help prevent recurrence of the allergy, or looked at the other way, not having regular exposure puts you at some risk of getting the allergy back. Sesame would be kind of like peanut in this context.

Also, how likely is it that you pass the challenge in the office and have a reaction ... say a week later?

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I would say that's very unlikely. What could happen is you could pass the challenge, introduce the food in the diet, and then notice a week later my excema is a lot worse or you could have kind of a delayed reaction that's caused by a different type of the immune system and if that happens, you want to call your allergist.

I noticed the link to justme/Lala's original hyperboards thread is no longer working. Her story (both the physical & emotional aspects) is so important imo ... I hate to lose it ... maybe she'd consider posting a summary in this thread?

Bias 1: Most published research has had minimal patient inputEvidence generated by clinical research will depend on who asks the questions, who defines the outcome measures, who interprets the findings, and who disseminates the outputs.

The individual case report sits at the bottom of EBM’s hierarchy of evidence. Indeed, we are explicitly warned not to trust ‘anecdotal’ evidence

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Much of the EBM literature relies on (and its practitioners must to some extent accept) fixed categories and definitions of what a disease is. Qualitative research can inform new categories and definitions if researchers are open to this possibility. Patients with depression, for example, who took selective serotonin reuptake inhibitors, were ignored for years after they raised concerns about side effects such as ‘electric head feeling’ that did not fit the existing ‘evidence-based’ model of the drug’s effects or the formal categories of adverse events used in standardised post-marketing surveillance [36].

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Bias 4: Power imbalances can suppress the patient’s voice

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Examples from these studies included doctors dismissing symptoms that were not explained by blood tests, ignoring patient experience that did not correspond to textbook descriptions, using medical jargon to re-establish a position of power, and actively withholding information or services. Patients learnt to conceal their own expertise and treatment decisions in order to comply with medical expectations and to avoid professionals becoming “patronizing or angry” [50, 51]. All these might be considered as examples of what has been called ‘epistemic injustice’ – that is, the numerous and often subtle ways in which patients may be dismissed in their specific capacity as knowers [52].

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Bias 5: EBM over-emphasises the clinical consultation

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First, we are highly social and mutually dependent beings. Our interactions with medicine often involve others (who may be present or absent during the consultation) [62, 63]. Managing a chronic illness involves work, which is typically distributed across a network of family and friends [3, 8, 31, 64–66]. Doctors generally know this, but their ‘evidence-based’ discussions with patients about the options for tests and treatments rarely take full account of which people and perspectives the patient would like to bring into the conversation, when, and how; this is of more than tangential significance.

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Second, the overwhelming majority of decisions about a person’s chronic condition are made by that individual, their carer(s), and their lay networks without the input of professionals [10, 67]. The knowledge of how to manage one’s own illness overlaps only partially with the knowledge that doctors draw on to manage diseases; it also includes the embodied, tacit knowledge of particular symptoms and the body’s response to treatment

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Tacit knowledge is the stuff of communities of practice – accumulated through years of experience and exchanged through stories

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Herein lies a paradox: clinician-researchers are building an experimental science of how they can intervene in patients’ illnesses [84], while patients themselves are building collaborative communities aimed at supporting and informing one another [80–83]. Hence, EBM’s accumulating body of (explicit, research-based) knowledge and the (informal, tacit, and socially shared) knowledge actually being used by people managing their condition are developing separately rather than in dialogue with one another.

When we believe we have experienced something directly, it is difficult to impossible to convince us otherwise.

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The first is that anecdotes should be documented as carefully as possible. This is a common practice in scientific medicine, where anecdotes are called case reports (when reported individually) or a case series (when a few related anecdotes are reported). Case reports are anecdotal because they are retrospective and not controlled.

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The second criterion for the proper use of anecdotes in scientific medicine is that they should be thought of as preliminary only – as a means of pointing the way to future research.

The intent of this work and report is to stimulate learning and knowledge in another relatively new and important area of patient safety – the engagement and partnering of patients and/or their families who have been harmed in healthcare to help make the system safer.

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For most patients or family members, the fundamental motivation is simply to prevent this event from being repeated; preventing harm to others. “It didn’t matter what our own personal story was but we just didn’t want other families being put in situations of harm.” This is reinforced by working with other like-minded people in safety initiatives (including other patients/family members as well as healthcare personnel).

The project fits the National Institute for Health Research INVOLVE definition of research for patient benefit: ‘research ‘with’ or ‘by’ people who use services rather than ‘to’, ‘about’ or ‘for’ them.’

Open AccessThis article is distributed under the terms of the Creative Commons Attribution License which permits any use, distribution, and reproduction in any medium, provided the original author(s) and the source are credited.

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Conclusion: More than one quarter of all children with a negative FC test result did not introduce the food. The FC test in its current form does not achieve its objective for this group of children.

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Symptoms during introduction at home had a significant influence on failed introduction, in one fourth of the children. This factor is also reported by van Erp et al., Eigenmann et al. and Flammarion et al. [3, 4, 9]. Adverse events during introduction after a negative FC test have been documented for failure in 12.7 % of the cases by Eigenmann et al. and in 5.5 % by Flammarion et al. A possible explanation for the relatively high occurrence of symptoms during introduction at home might be that the introduction dose was higher than the final dose of the FC test. All FC tests were performed with a recipe described in the study by Vlieg-Boerstra et al. [9]. The term failed introduction is thus debatable; the children who experienced symptoms during introduction might react to a higher eliciting dose than used in the challenge. Consequently, an open challenge with higher doses at the department should be performed to identify susceptibility to higher doses and at the same time convincing for the child and parent that the allergen is not harmful. Another reason for the more frequently occurring symptoms during introduction at home could be the differences in intrinsic and extrinsic factors between clinic and home and the food matrix [8].

RATIONALE: The false-negative rate of double-blind oral food challenges (OFC), as defined by a positive open-OFC following a negative double-blind challenge, is reported to be ~3%. Despite the fact that open challenges are more commonly used in the everyday clinical setting, there are no studies examining the occurrence of false-negative open-OFC. METHODS: We performed a retrospective medical records review of all open OFC performed in our outpatient center from January 1, 2009 through December 31, 2009.RESULTS: A total of 334 challenges on 276 patients were reviewed. The majority of challenges, 253 (76%), were negative. There were 4 cases (1.6%) in which patients developed symptoms consistent with an IgE-mediated allergic reaction at home to the challenged foods after appearing to pass an open-OFC: 2 were to soy, 1 to egg, and 1 to cashew. Time to symptom exacerbations following the negative challenges ranged from 6 hours to 5 months. In the case of symptoms occurring 5 months after the challenge, the patient had been eating the food on a regular basis until redeveloping symptoms, which were confirmed by repeat challenge. Three of the 4 patients had follow up visits either confirming the reaction with repeat challenge or demonstrating an enhanced sensitization by increased skin prick test or increased food-specific serum IgE levels as compared to their baseline values.CONCLUSIONS: Physicians performing open challenges should be aware that patients may rarely develop IgE-mediated symptoms following a negative open-OFC. Possible reasons include inadequate dosing, questionable symptoms at time of initial challenge, and possible ‘‘redevelopment’’ of allergy.

When people share data with an organization like AAFA, it allows AAFA to understand how asthma and allergies are affecting their lives. That gives AAFA the ability to “speak” (advocate) for people with asthma and allergic diseases, both with confidence that we understand what those people need, what is most important to them, and with the authority that comes from truly listening to them.

patients or caregivers are more than their stories, we are thoughtful members of the healthcare system, or research team. We provide perspectives that bring insight to areas that were previously obscured

Unwanted voices: Some points of views/ experiences are more welcome than others (particularly those who agree or are less challenging of the system or services).

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Devaluing people: not valuing or listening to what people say.

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Tokenism: asking for involvement but not taking it seriously or enabling it to be effective.

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Gatekeepers/individuals who block the involvement process: individuals who obstruct the involvement process by their attitudes or actions and stop people getting involved.

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With current involvement practice, power imbalances frequently manifest themselves in different ways, starting with who to involve. PPI often involves a narrow group of individuals, with the handpicking of just one or two ‘appropriate’ or ‘acquiescent’ patient representatives to be involved in committees or projects.

This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/

Belle, an Australian woman somewhere in her 20s (she doesn't even tell the truth about that), had a very active website where she claimed that she had beaten multiple forms of cancer by eating right and living healthy.

Hmmmm ... I don't even know where to start ... I fear this will be quite convoluted ... ok ...

Do I have to say it? Is this issue worth giving up more of my family's privacy? I prefer posting/sharing info & links. Is it worth revisiting those old wounds that I would rather leave in the dust?

Fine.

My dd passed an OFC to a food (other than peanut) and then had reactions when we introduced the food at home as instructed a few days later ... and she continued to have reactions for 6 months until we switched allergists & that new allergist reduced the dose.

How can I explain to you how horrible an experience that was? How can I/we get those allergists on the webinars to "hear", to "understand", to "believe" that reacting after a passed food challenge is in fact possible, that it happens?

The thing is, let's be honest ... we have a credibility issue here. Who is Links? I could be making this whole story up, right? Same with Lala ... yeah, if I remember correctly, she said her son anaphylaxed after her allergists told her to keep feeding the food after the pass ... but, really, just anecdotes, right?

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ok ... deep breath ... before anybody flips out ... I'm not going to name our former allergist here (I don't think that I told anybody in the online FA community even privately in pm's or emails her name) ... I am not going to name in this post where the OFC was done (I did tell a few people that privately) ... and, btw, there's nothing stopping me from naming names but ...

I am not looking to destroy reputations, I am not looking for revenge, I am not angry anymore ...

but mine is a story that likely would never be posted at FARE or KFA ... it's not pleasant ... but those webinars ...

again, how can we patients get the professional community to listen? I'm going to post a little bit of dd`s medical record here to give a sense of how bad things got (will "X" out some private info like name & allergen):

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the gold standard is that she tolerated the xxx with the challenge. Mom is extremely anxious about this issue.

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Mother is extremely tearful on the phone.

I am extremely frustrated and infuriated at the situation. Xxx passed a xxx challenge. There is no need for an epinephrine autoinjector in school. Nonetheless, we shall provide one for school with appropriate documentation for an epipen due to mom's request.

Epinephrine use is not going to be an issue. If anything, hives may ensue for which xxx will receive benadryl. Likelihood of xxx's theoretical risk of anaphylaxis to xxx (which she has passed) is negligible. Resources have been wasted to rectify this issue on multiple occasions.

That's all I'm going to post from the record here ... but maybe this shows a bit better why those webinars were enough to push me out of my recent lurking/reading mode ...

& to our former doc ... yeah, it didn't go so well between us & I can see now how I also contributed to that not being a good relationship ... you're probably a good doc ... you're human/I'm human ... you help a lot of patients ... you do a lot of good ... from what I've read, you docs can be kind of hard on yourselves ... this is not about attacking or judging ... this is about taking a bad situation and using it to help prevent future harm.

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So my main question is how do we prevent something like this from happening to another FA family?

By not naming names ... the doc's, the hospital's, mine ... the above remains just my word which basically counts for nothing in terms of proof that this took place. So how do we close that gap between my word and the scientific literature in a way that is productive .... that does good ... not in a way that further hurts me or my former doc?